LIVERPOOL — A judge in the family division of the UK’s High Court of Justice has again rejected the request of the parents of Alfie Evans to allow the child to be transported abroad to hospitals willing to take him for experimental treatment. Evans’ case marks at least the third of its kind in the past year where the UK courts have rejected parents’ pleas to obtain treatment elsewhere or to care for their seriously ill child themselves.
Alfie’s parents, with the assistance of the Christian Legal Centre, had made one more effort on Tuesday to save their son’s life after he continued breathing on his own all night and throughout the day following the removal of his life support Monday night.
“I fought hard in court for my son because I know what’s right! And look where we are now; my son is still ALIVE AFTER OVER 10 horrendous, scary, heartbreaking hours,” father Tom Evans posted to Facebook earlier today. “Pray for him.”
Evans wanted his son to obtain experimental treatments, but Alder Hey Children’s Hospital in Liverpool has said that such efforts would be futile. Justice Anthony Hayden again sided with the hospital on Tuesday, opining that while the child is “a fighter, resilient, courageous and a warrior,” the only assistance another hospital could provide is palliative care.
He said that the hospital should “explore” the options of allowing the child to be placed in a ward, hospice, or to go home to spend his final days. Hayden rejected arguments from Christian Legal Centre attorney Paul Diamond that Alfie’s condition isn’t as bad as the doctors think since he continues living and breathing on his own without artificial respiration.
“The sad truth is that it is not. With little, indeed no hesitation, I reject that,” he said. “The brain cannot regenerate itself and there is virtually nothing of his brain left.”
However, numerous passionate protesters have gathered outside of Alder Hey in support of Alfie’s parents, as they believe that it is wrong for hospitals and judges to supercede the wishes of parents in regard to the treatment and care of a sick child. See video below.
Evans had attempted to remove his son from the hospital last week, but Alder Hey called the police.
“I have a documentation saying that I have the right to take my son out of … this hospital,” he said in recorded footage. “Alder Hey is stopping us. Alder Hey is calling the police. To murder my son. Alder Hey has phoned the police to stop me from taking my son out of the hospital.”
As previously reported, Tom Evans and Kate James took their son Alfie, then six months, to Alder Hey in December 2016 due to a chest infection.
The child, who was born healthy by all indications, was checked out by a doctor prior to his admittance as he began exhibiting abnormal jerking movements. Evans and James state that they were told that the boy was simply a late bloomer.
While hospitalized, Alfie struggled to breathe due to a myoclonic jerking spasm, and was placed on life support. In January 2016, it was thought that Alfie would not make it, but he overcame the infection for a time and began to improve. However, the infant had to be intubated again after contracting another infection, and has been stated to be in a semi-vegetative state.
Evans and James state that they still do not know specifically what is wrong with their son other than that he has a degenerative neurological condition, and disagree with the hospital that Alfie is unaware of his surroundings.
“The hospital claims that Alfie is ‘insensate’ and unaware of any stimulus or irritation, which is proven wrong in hundreds of videos, against the odds of a heavy cocktail of anti-seizure drugs with sedative effect. Daily, Alfie moves, stretches, yawns, responding to tickling and noise and cuddling,” a petition on Change.org states.
Alfie’s parents have recorded their son yawning, stretching and opening his eyes as they believe it is evidence that doctors shouldn’t give up on him yet.
However, in court proceedings, Alder Hey officials testified that they believe that Alfie’s brain is “entirely beyond recovery” and 70 percent damaged. They argued that it is in the child’s “best interests” to be withdrawn from life support.
According to the BBC, Justice Hayden ruled in February that Alfie’s plight was “profoundly unfair,” but agreed with Alder Hey that treatment measures would be futile, and that the nearly two-year-old boy rather needs “good quality palliative care.” A court of appeals upheld the ruling last month.
Earlier this month, Hayden ordered the end-of-life plan to proceed, stating that while he understands the frustration of Alfie’s parents, he sees no chance of recovery and believes that Evans is hoping for an “entirely unrealistic solution.”
“On February 20, I gave a conclusion after six days of evidence after which Mr. Evans cross examined doctors with conspicuous skill and manifest sincerity,” he said. “But I came to the conclusion at the end of that hearing that Alfie’s brain had been so corrupted by mitochondrial disease that his life was futile.”
“By the time I came to conclude the case the terrible reality is that almost the entirety of Alfie’s brain had been eroded, leaving only water and spinal fluid,” Hayden stated. “Even at the end of February, the connective pathways within the brain had been obliterated. They were no longer even identifiable.”
After appeal efforts failed, Alfie’s life support was removed Monday night, and his parents have hailed him a hero as he has continued to breathe on his own. They have also chastised the hospital, which they state has not provided any nutrition for the boy in at least 24 hours.
Alder Hey said in a statement on Tuesday, “Our top priority … remains in ensuring Alfie receives the care he deserves to ensure his comfort, dignity and privacy are maintained throughout. This includes working closely with Kate and Tom as they spend this precious time together with him.”
Christian Concern, the parent organization of the Christian Legal Centre, outlined in a post on Sunday that Alfie’s case is important because it involves the rights of parents to direct the care of their children—especially when other hospitals are willing to try.
“Some people wrongly think that this case is purely about permission for Alder Hey to turn off Alfie’s life support. It is not. There are indeed times where life is, completely artificially, being sustained, and support of some kind must tragically be turned off. This is not Alfie’s situation. He remains undiagnosed,” said Chief Executive Andrea Williams.
“There are other, excellent hospitals ready to continue caring for Alfie and attempting to help. An air ambulance crew was blocked from taking Alfie to one of these hospitals—first by Alder Hey, then by the courts,” she said. “No one is forcing Alder Hey to keep treating Alfie indefinitely. They are being asked to stand down, pass the medical records on, and allow others to treat him. It is this that Alder Hey has been fighting, tooth and nail.”
Williams said that while the hospital believes it is acting out of compassion, “ending the life of an innocent child—where continued treatment is being offered, where the child appears responsive, where no diagnosis has even been made—is not for medical professionals and judges to decide.”
Read the similar stories of Charlie Gard and Isaiah Haastrup here and here.
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